Need advice re. Infliximab/aza combo in 14 yr old boy

[Louise*]

Heres a little background info...my son aged 14 was diagnosed with CD in october 2013, he started azathioprine straight away and has done EN twice but symptoms returned within two weeks each time, he was then put on Prednisolone but this had no effect, and he has two weeks left of his taper.

He has just had an upper and lower endoscopy and MRI which show active disease at various points along his small and large bowel and mild gastritis.

The next step his gastro team want to take is to give him Infliximab alongside his azathioprine which frightens the life out of me given the increased risk of t cell lymphoma particularly in his age group.

I would just like to get some advice about possible alternatives given my sons resistance to everything so far.

If we opted for just infliximab would he still be at increased risk as he has taken aza at some point (as I read somewhere on here) or because he would still have it in his system.

As nothing has worked so far and assuming Infliximab worked for him we would obviously want to enable it to work for as long as possible and so would need to combine medications to stop him becoming resistant to it, but are there safer alternatives to aza?

I would really appreciate any advice you can give, as we really dont know what to do :sign0085:

 

[Clash]

Hi I'm going to tag my little penguin because she has some information regarding this.

My understanding is that the treatments don't have to be used concurrently to elevate the risk, meaning that if the immunosuppressive drug has been used at any time before or after the biologic the risk remains. But others may be by with more definitive info.

That being said my son has been on remicade and the immunosuppressant methotrexate for a year and a half. I weighed the benefits and risks and for me the risk of disease progression and uncontrolled disease was greater than the small risk with the meds. But this is a very individual decision.

Even on both meds my son's CD has progressed so we are at another crossroads.

I hope you are able to find treatment that will bring your son into remission!

 

[Maya142]

Hi Louise,
My daughter has Crohn's and juvenile arthritis and we have done the Infliximab and methotrexate combo but not Infliximab and azathioprine. It's a hard decision to make but the combination of Remicade (infliximab)+ methotrexate helped me daughter a lot. She was unable to stay on the methotrexate because it caused extreme nausea and dizziness, but most kids do fine on it.

This is a good presentation about the risks with these drugs in case you're interested.
http://programs.rmei.com/CCFA139VL/

Good luck!

 

[my little penguin]

The risk is the immunosuppressant - Aza ,6-mp or Mtx alone increases lymphoma .
The combo whether taken together at the same time or years apart increases the risk but think of this:
In the US at least
Risk of dying for those 14 and under:
In a car 1 in 250
Drowning 1 in 1000
T cell lymphoma non Ibd person on the street 2 in 10000

Combo drug tcell 4 in 10000

So very good odds .
Some papers state combo for a year reduces the risk of antibodies .
Some say the combo doesn't
My kiddo was on 6-mp then Mtx and later remicade only.
He had two allergic reactions after 8 months with no antibodies present.
I was sick over giving him remicade due to the risks.
Overjoyed when it worked
And purely nauseated when we were told he had to stop the wonderful drug that gave DS his life back.
Prior to remicade quality of life was bad .
Almost two and half years of biologics and DS has way more good days than bad .
A good place to be .
Good luck

 

[myboy12]

We are in your same boat...scared to start our 12 year old son on a combo of 6mp and Remicade. This decision consumes our every thought, but, ultimately I think it is the best way to control his simmering disease that 6mp alone can not manage.

Just wanted to let you know that I am right there with you!

 

[Spershick]

My son too has just had his first remiacde treatment last week. He is also on imuran and doctors want to keep him on it...scares me so much. All of this is so new to us as he was just diagnosed this past January. Keeping our fingers crossed this remiacde is his answers as this last bout ( 10 days in hospital) was the worst. Stressful seeing our kids suffer (

Thanks little penguin for putting all that into perspective..when you see the numbers it really isn't scary.

son Sean age 15 diagnosed January 2013
Prednisone tapering
Imuran 100mg
First dose remiacde last week
Flagll
Failed drug Asacol

 

[Louise*]

Thanks everyone for your reply's, and I am sorry Spershick and Myboy12 that you are facing this too, I wouldn't wish this on my worst enemy!

And thank you My little penguin for the statistics it's a great help to be able to put things into perspective, although my son seems to have been so unlucky with all his treatments so far I can't help but think what if he is one of the four.

We talked it all over with him yesterday....what a conversation, having to put that kind of decision on a fourteen year olds shoulders when he should be hanging out with his friends without a care in the world...it breaks my heart!

I can't help but wonder if there are other less risky options we could try first.
Prednisolone did nothing to help, are there other steroids he could try or is it a case of if they don't work then no steroids would?

Thanks for your input guys, as much as I wouldn't like anyone to go through this horrible illness, it is a comfort to know there are people with a wealth of experience that can help those new to the condition like ourselves.

 

[Spershick]

Louise..I know how hard it's been. Feeling so helpless as a parent we want to get our children back to a healthy lifestyle. I too was so scared of all these treatments. Reading up on all of them with side effects ect made me nervous. When things were failing for Sean we were losing hope. This last flare was so bad we kept faith of the doctors who said this was the next step. He had his first remicade on Wednesday just days after seeing him in his worst shape. Within hours of treatment he was feeling better and 2 days later home!! Back to school today even. So I'm right now calling this a miracle drug..next infusion on the 12th. Fingers are crossed all goes well.

 

[Jmrogers4]

I understand I have a 14 year old as well. The only other steriod that was offered to us was budnisone it is released in the intestine as opposed to systematically but I think it works better for large bowel involvement. Although my son's GI was ready to give it a try for his small bowel inflammation if my son wasn't willing to do EEN since he flat out told the doctor he would not take prednisone.
I don't think you can help (I know I can't) what if my child is one of the percentage, but he could be that percentage for any number of accidents yet we let them get into cars, go swimming, etc. without much thought because the quality of life far outweigh the risk. Unfortunately as much as we might wish it we can't keep them in a bubble safe from everything.
I'm forever surprised when my son asks specific questions about treatments and options. When he was flaring and the GI first thing said we could do a course of Prednisone and Jack flat out told him I don't want that what are my other options. And GI said EEN I was bowled over when he agreed as it had been torture several months earlier to get him to drink them as supplemental nutrition, but I think it was much easier for him as he felt in control this time and it was his decision, kwim?
It's so much about them having some control at this age and even though I absolutely hate that he has to even think about it